For this and all previous episodes. Tonight we are thrilled to welcome David Hernandes and amy stewart. A former reporter for the New York times in writing about the intersections of race, immigration, Class And Sexuality for almost two decades. Her most recent book is the Kissing Bug, the Troop Story of family and insects, Nations Neglect for a deadly disease. She is the author of the awardwinning memoir, a cup of water under my bed. Growing up in new jersey, 1980s, hernandes believed her aunt became deathly up from eating an apple. No one in her family spoke of infectious diseases and even into her 30s, she only knew her aunt died of a rare illness. As she dug deeper, she discovered the kissing Bug Disease is more prevalent in the u. S. And the his eco forest. Today 300,000 americans has it. Why do some diseases make headlines and others fall by the wayside . She began searching for answers about who our nation chooses to take care of and who we ignore. She interviews patients, epidemiologists and even veterinarians in the department of defense. The new book, the Kissing Bug tells a story of how poverty, racism and public policy conspired to keep the disease hidden have a disease intersects with her own identity as a knees, sister and daughter, a Writer And Researcher and citizen of a country its only beginning to address the harm caused by this disease and the dangers it poses. The Kissing Bug reveals the intimate history of a marginalized disease and connects us to the lies at the center of it all. Joining in conversation is amy stewart, the New York times bestselling author of the cap Sisters Series based on true stories of one of americas first female Deputy Sheriff and her two rambunctious sisters. Her nonfiction title includes wicked bugs, we could plant and flower confidential. Her books have sold over 1 million books sold worldwide in 17 language. This event will include an Audience Q a so keep the q a button at the bottom of your screen if youd like to ask a question. If someone tapped a question youd like to know the answer to, about that question by clicking the thumbs up button. Please consider supporting them by purchasing a copy of her new book from us, daisy, amy, what id like to welcome you both thank you for joining us. Thank you for joining me. I lived in the same neighborhood as your publisher paves the way i found out about your book is i drop something off and they handed me a copy of the galley and i immediately, i saw the cover and thats all i do about it and i immediately went on this rant and saw insects transmitted diseases. When you read in a few minutes, we will explore a personal story about the first thing i wanted to say to you and to the audience as i became interested in the transmitted diseases when i was writing which looks like a goofy book but i did a lot of research and what really struck me about insects transmitted diseases and when i would tell the audiences around the country, i will tell you all these stories about these creepy bugs and diseases they transmit in foreign places youve maybe never been too. And thats why some of these things happen in other places and not here. They are a disease of those just on a different scale. I was so excited about this one is a tough story to tell because i feel like we dont fully grasp these stories and you have made it real and its a story we cannot connect to so thank you for this book. Thank you so much and i agree with everything you are saying. We have invested in particular ways in this country against infectious diseases and in specific communities in this country as well so e decisions have been made that affect us absolutely. Right. There are so many things that i want to talk to you about because im really interested in the research and theres a bunch of we can get into. You want to read now and we can go from there for the rest of the conversation . Yes im happy to read. I want to read, i was reminded that you wrote about Charles Darwin in your book and i thought it would read from that section of my book too. Its a bringing together of Memoir And Journalism to write about Chagas Disease which my aunt was diagnosed with and after many years lost her life from this disease. In its chronic form it does not have a cure. It usually goes after the heart and i didnt get all that information when i was growing up. The information that i got was the physician describing that my auntie must have eat eat some kind of fruit in her Home Country and the parasite was transmitted that we so part of the book is also describing making sense of this disease as a child and then as adult and as a journalist being able to research. Im going to read from a chapter and i think all you need to know is my auntie who was diagnosed with this disease and lost her life to it and its anti bebia like the bible. She was not religious but she will was named that because she had a long memory and seemed to be hanging on to every story will Story Memory and shes the one who began when i was a child who explained the disease to me. Antibebias stories were akin to praying the rosary. She talks about her Kitchen Table of Pomegranate Lipstick and her tall tales about ute pageants. Her story about how she had almost died when she was young and thats how sick she was. I might have been almost 15 Minute Kitchen started to feel crowded for my arms and legs and my height which 2 inches fell quite tall. Thinking about it i asked how could eating or fruit almost kill her and if it was contaminated bebia answered as a Matter Fact that how . The for he was contaminated by a Spanish Word for insects. It can also mean a mans and in some parts of latin america can mean little people. Years later when i started reading about the Kissing Bug i did not know what i would find but i absolutely did not expect to come across Charles Darwin. In 1835 Darwin was sick and four years into his trip to South America the one that gave him the basis for his book on the origin of species. In march of that year he and his Guide Road meals to the point of argentina. The land was flat and the air was hot and for a whole Day Darwin found no water and only a few houses. When they neared the village he noticed a field the color of blood a locust invasion. People race from their cottages and set branches on fire and waved at that locus. They shouted hoping the noise and the smoke would turn away the tiny East But Nothing works. Darwin rode on. The man had 10 mules with them and when they finally escape the locust and reached third he expected to sleep well. Who does not sleep like a king under a Willow Tree . But when darwin closed his eyes that night in argentina the Kissing Bug crept out from their hiding places and the insects did not care if it was Charles Darwin are not. The sun had vanished and ravenous they set off for the evening creeping onto his body. They expected him to be asleep or they expected defeat on him but darwin was awake and horrified and despite being a man of science he felt out disgusting it was to feel these insects quote nearly one inch long and black and all parts of your person gorged with your blood. The Kissing Bug came to be known and classified in the family of insects for their vampire like tendencies. All over the americas however people adopted other names. Here in texas in the southwest people called the Kissing Bug of bloodsucker and in Argentina And Bolivia people called it a word that probably comes from a language that millions of people speak today in South America and is named after the anchor empire. The bug that lets itself all and its probably a reference to it in slipping out of the crevices of the Walls Mud and stick falling from the bodies of their victims. In central America And Mexico people say the Kissing Bug is a name thats used for bedbugs. Years after id grown up in my home a man from mexico tried to explain it to me this way. They are a little insects and big insects the Kissing Bug is a big insects. I will stop there and thanks for listening everyone. I have a special surprise guest today. Oh my goodness. Thats your little friend. This is probably super close. I had this made up. An anthropologist made this for me and i traveled with it. You can see this as a mediumsize one and you can see how big they are. The Audience Wont know this but when i began this project i was terrified of insects. I would have gone like this immediately. Thats the strange part of this journey is battling that fear that i had in that stigma. Right, right. We all have these kinds of stories in our families that we grow up with and absorbed a mythology about what has happened and then there comes a point where we question it so i wonder if you can talk about that like what it was like for you when you started to realize maybe this is something i want to look into. That something i really tried to document and writing this book because it was a little bit like red cramps in my house. I was translating for my auntie when i was six years old. She understood english but she was not english dominant. I was in first grade and i was the voice between her and the nurse that was sent to her house between surgeries. She was lucky to be diagnosed in the United States in new York City by doctor there. I knew there was something happening with my auntie but i didnt quite know what it was and around 13 a Family Member told me its from some contaminated fruit that she Aid And Bebis i go oh wait the fruit has something to do with an insect. There was never any language around insect transmitted disease, none of that language around Science And Medicine and when i was a little bit older in high school was when i first heard that sub eight was not this random name for a disease but the disease had been named after Carlos Chagas from brazil who discovered the disease in 1909 and that was quite a shock. I remember realizing oh this whole time i thought it was some sort of fancy latin medical term but it was a person who discovered this and was connected with this and when i was older i learned a little bit more with my auntie decades going in and out of hospitals being in affected and with her is her gastrointestinal system so i anew from the medical Caretaking Side the impact the parasite could have but it wasnt really until she died which was quite a shock for me at the time because i think its hard for people who dont have a chronic Family Member to understand the magical thinking that you get into over the years because you are constantly in hospitals with someone whos very sick and you just think well they are just sick again and is just one of those times again. The end of her life was quite a shock and when i started researching is when i found out this isnt rare at all. There are 300,000 people in the United States who have this disease and they are all like my auntie. They are immigrants from south or central America Or Mexico and very few of them know that they are good because the parasite can be dormant and the thing about your whole life are people who are infected to go on to develop cardiac complications. It was actually in the wake of her death that i started to actually put more the pieces together including that my family was not totally lying to me about the fruit. You can have fruit thats infected with these insects that usually it leads to acute outbreaks in groups of people because its transmitted in juice or some kind of food which was not the case for my auntie. She probably had exposure to the insect at some point. So what it was quite a long journey of living to piece it together and when i was writing it i was trying to do like a 10,000 Puzzle Piece and it felt like a lot of information at the same time. When you look at the finished it seems so obvious and so clear but when we are writing like none of that is clear. And i think one of the things is that it feels to me like its very much a part of a particular kind of Science Writing that is very immersive and blends so beautifully about an investigative journalist for Research Perspective and also you are talking about chagas is a real person and they are all real people. Science is a story that we tell ourselves about the world we live in an science is all the storytellers and the ones who are figuring it out and putting it together so the rest of us can understand it. I think about henrietta lacks and the story became personally involved with and in some ways mary roach. Its generally not a Family Connection but she nonetheless puts herself in the story and you hear about how scientists actually do their work. When you are thinking about writing this did you think now it just looks like a new way to do this book. What is it even going to be and how my going to tell the story . Is so interesting you mention those two books in particular because i studied those books very carefully. Initially i was not planning to include any memoir. I thought it would be on the site of the point where i would write more intimately about the patients that i met so i give full credit to my amazing editor who said what about the story for antiand in that process of writing a realized oh my gosh that intimate voice is what needs to did that be the backbone here what im talking about like complicated Motherdaughter Relationship with her or talking to a Biologist And South america because you are right thats what i was seeing in this book and i studied mary Roachs Book on cadavers. No matter where she went it was her voice. It was at intimate quality of her voice that was not only introducing me to people and places but its the same voice i was explaining in science in making it a tax that i wanted to read as opposed to attacks that i wanted to locate. And yeah it was a very conscious decision to have that voice and be the anchor through the book and the guide for people because i knew there would be i hope there would be readers who would shy away from a Walkabout Medicine and science and take up this one and i thought about that a lot. I wanted to be invested in this but its a juggling act. I came to appreciate much more deeply what scientific journals have been doing for a long time and you said immersive. For example i did end up, we have these insects in the United States usually in the southern part of the country. They are all over california and in the southwest and texas has quite a number of species of them so having started out in terrified of insects, i wanted to see what researchers were doing so we went there and look for Kissing Bugs in the middle of the night and on about what exactly they look like and it was so easy to track them which was surprising for me but amazing these are real people and they loaded up the truck with all of their equipment and spend hours out there looking at bugs hoping to catch what they came to catch and its fascinating actually. As the scientists you connected with were more eager to talk to you because of the connection you have. Were you comfortable with that . I have a story here and did you feel like maybe it made them more opening and willing to give you time . Yeah. With scientists and doctors initially i was not disclosing a personal discussions i have some adjusting interviews with them were toward the end of my interview they would say why are you interested in this because a lot of people as you know have not been interested in this disease. Its on the World Health Organization sites around the world so i think of it as an afterthought like why do you care of all people and sometimes they would ask because they have heard my last name from doing a Phone Interview they would say is there any chance that you have a connection with Chagas Disease and your Family Background and the reason i didnt mention it, i was not planning to do a memoir in the beginning. And then as it went on i had that classic Journalism Training so you never reveal anything personal however when i approached families that were shared that first because id grew up in a workingclass immigrant family and understand the dynamics at play there when danger shows up at your door and asking about your medical history and use it i had a connection either through another Patient Dora Doctor but i still felt like i wanted to create the story if i disclose i had an antidiagnosed with this disease. It was tricky however amy because so many times patients wanted to know what had happened to her and i couldnt say shes managing her symptoms or she is well protected and sane if that and to have to tell them that she had ultimately does died from this disease i think it put them at ease but also created, i wasnt a traditional journalist in that since when i was interviewing patients so i was inhabiting multiple positions at the same time that some of the cases i ended up interviewing over the span of many years as the relationships changed over time. Maybe you can talk a little bit about bringing this information back to your family so people could understand it. Here you go out finding out what really went on in this global context even in the context of other diseases and then you are bringing this back to people with another story. E. They were always really surprised about how much i was learning and i dont think they saw it in contradiction to the stories we had in our home. They think they saw it as an addition to the story basically. Like she was contaminated by eating fruit but i think they appreciated, i think they were also very moved to hear about the stories of other families because we were i said with our experience. We had never met another family who had an Effect Advice Chagas Disease so it seemed like there was an emotional journey especially for my mother and her other sisters to hear this woman was having cardiac issues and they were in and out of hospitals. It was the experience of people have with any patient support group. You are grateful to not be alone but the same time you dont want anyone else to be suffering from this either. Probably the most surprising story that i brought back home plus the fact that this parasite can be transmitted from a mother to a child during pregnancy so congenital chagas was not something that we knew about it all. My auntie had not been able to have children herself but we had no idea that this existed. That was quite a shock because public health campaigns were underway in different parts of latin america through different capacities and historically people have thought about this is an old Persons Disease because thats when you see the symptoms. You could be infected as a teenager or a child but 30 years later you are in your 40s and now you are exhibiting shortness of breath and now you need a pacemaker or defibrillator. The patience to mere father was infected and her sister as well and her sister was in need of a pacemaker but she thought this doesnt happen to children so she had limited public health information. That was probably the most surprising news that i brought back home and i learned that around the same time that the Zika Virus was happening or it was all terrifying that this disease could be transmitted that we. That was another part that was shocking. 8000 babies are born every year with this disease and the u. S. That number smaller anywhere between 60 and 300 but we dont do prenatal screening in this country and thats Thats Something im hopeful a change in the coming years because when i dug into the numbers and put on my Journalist Hat i was like how many babies are being born to women from South America central america and in born in the u. S. And there are 700,000 babies every year so they are quite a number of children that we continue to miss. Thats another public health the End Something i heard a lot about whether its someone coming from latin america to tonight at states or you can imagine similar terms elsewhere in the world from you when you come for one place and come to another place and theres no expertise about the health issues may you may have felt. Not everybody has had the same symptoms around the world. In the u. S. Because of the way medicines are set up its not like treating parasitic diseases. If you go into a specialty there ats not going to be parasitic diseases because theres no money. I talked to a repressor about parasitic diseases. Students are graduating with enormous amounts of debt and they are not choosing neglect to diseases. Its miraculous that you get to teach one course to cover this but i think the push has to come from public health advocates to change things. For those of you who dont know the Carter Center has a huge Health Component that focuses on parasitic diseases. They have 66 others that they work on but they are committed to eliminating them and it takes that kind of focused in this case a big foundation to say we are really going to go when one vaccine at a time when there are zero people left. Without that where are we . That was a big ahhah moment for me when i was working on this hook was exactly that. Realizing so many times we contain diseases rather than eradicate them even though a red occasion as possible. Chagas are affected who dont have the access to Health Care that others have and its more tuned to Lyme Disease. You wont catch it from people who have it so it is incredibly easy for this to be neglected that the same is true when i look at the history of tuberculosis. We dont worry about tb in the u. S. Anymore but we did not eradicate it locally and so when you look at the u. S. And who has tuberculosis it tents to be immigrant communities are those in prison or homeless shelters or in congregate living spaces. You look at hiv in the u. S. And you think oh its not an issue anymore and its completely an epidemic in the lot communities in the south. We make these decisions and im a little bit nervous about what that means in terms of covid. I think i appreciate biden pushing for vaccines to get to other countries because we cant have that containment policy. Need to be a red occasion. I was going to ask you im assuming the book was completely done and turned in before covid started. It was, yale. Now in hindsight has anything changed in terms of your perspective about disease and now you have experience with covid is there any. We actually halted the press because it was in the beginnings of production so when the pandemic hit we have depos and say okay how do we address this in the book given the timeline and what was surprising was how easy it was in the book to transition. Actually amy you probably saw a copy earlier and there are new pages on covid because it was disturbing all the racial disparities in Health Care we are talking about with chagas in tuberculosis and hiv. He came to the forefront and we still are at the forefront with covid. Today i was hearing a News Report about vaccination rates in California Overall are doing really good but its higher in wealthier and white communities than for communities of color so those kinds of disparities and they think they are interfaced and i think covid is interfaced but you forget about them once the crisis is over. My shift in perspective is im hopeful because of the scale of the pandemic that we are not going to forget so quickly but i think that still is yet to be determined. This pandemic has really changed how we think about public policy and how we think about Health Care and access and racial disparities has yet to be seen. I thought about that too. Anyone can see what happens in india affects us and so on. We are going to start taking questions soon so Everybody Think of your questions and put them in a q a. We are about to get into that but before i do i was interested in the Writing Process like did you write a prequel of the book and then later had to work out the timeline and what was the process of writing the narrative because he wrote this Family Story that goes back a ways and i know the Research Process is you do one part of it early even though its at the end of the book and you have to rearrange everything to put into a narrative so what was that like . You really know and described it perfectly. I was writing even though i was not going to write it as a Memoir And Wasnt going to write much about my anti my antibecause im Learning Information and i would find myself writing mostly little fragments and thinking this is kind of for me and i could get more clarity about what happened in our family. What i was really focused on are the stories which makes up the third part of the book and was written first. Initially i thought i would do a much deeper dive into their stories and make it the backbone of the book so was part three that happened first and the research, i was writing as i went along and i also had the big okay ive got six months and i need to sit down and start publishing and writing further but a chunk of the research writing i did is i went along and what was challenging ended up being the Memoir Part where i gave by people who are thinking about Science Journalism and in an engrossing way which is my favorite kind of writing. Thank you so much. Do want to jump into questions . All right. Let me just get into this. This is a great question to start off with. Leinwand to know the cdc said few diseases with bugs have been documented. The people and their many people who in bit been bitten unaware . This is a great question. Yes most people when they are written its very easy to miss it and i will talk in those is in latin america and here. You may have an allergic reaction to where there was a bite and that can be easy to miss especially if you are living in an area and we are talking about rural areas in South America and central america and they dont know if they are super dangerous and sometimes in the community they know to stay away from them but the symptoms are not dramatic so you might have a fever and you might have a swollen eyelid where the parasite entered your body but in most cases they tend to result pretty quickly. The parts that challenging is there are no huge red flags that would make someone seek medical attention and the reality for rural areas as opposed to central and South America if you wanted to get medical access you oftentimes cant. In the u. S. The insects here you dont tend to get the swollen eyelid that you will have allergic reactions. They usually are camping or you live on a ranch or you have that kind of exposure and you dont think of it as being anything different than any other Bug Bite that you happen to be giving at the moment and its not like Lyme Disease where you were looking for it distinctive Rash Or Something like that. Its really easy to miss it in that acute phase which for adults is really difficult because in that acute phase their medications that can oftentimes be successful in eradicating that parasite but once youre out of that acute stage the medications dont work in the same way and you go through that chronic phase. The cdc has documented fewer than 100 people. You have to test positive in two out of three tests and thats because there was a scientist and i hate to say this but the parasite is coming but that parasite is coming and they can be very elusive at times. The cdc has those rules in place. A lot of people who have tested positive in the u. S. People that i interviewed it was mixed like one woman in california to clearly had a Bug Bite but it was arbitrary because she was on a piece of property in california with her spouse under children and no one except her was infected. Everyone was tested ultimately and another one who i read about in the book most likely was infected at her Mothers House where she would visit sometimes in texas but her mother was not infected herself. We cant say that because you have exposure you are definitely going to get bit and get infected if that makes sense. Some diseases are like that. And most of us tend not to think much about dog bites. I always tell people tell me when you were going on vacation and i will ruin your trip telling you whats going to kill you. I have a lot of Bug Control products were everyone else makes fun of me. I am loaded up with protective stuff and its because i think the thing here is nature is powerful and when it comes to something like the pacific coast like we understand we think about the ocean and you dont turn your back on the ocean and we think about fires and floods. Absolutely. A few more questions and we can talk about other insect diseases like malaria which is more wellknown. Malaria is credibly prevalent and millions of more people, it infects many more people in many regions of the world so i would say Thats Part of the reason it gets more and attention. I found this surprising myself malaria is considered effective disease. Theres no reason we should not have the eradication of malaria that disproportionately affects poor people around the world. In fact during the pandemic one of the medical opeds that has stayed with me was from a researcher in South Africa i think it was and she was thinking about because she works on malaria and she was thinking what would it be like if we drew from the resources that we are throwing at covid if we threw them at malaria . Her lab is having to put on everything on hold if they were doing alario to focus on covid and for her it was a painful reminder of the inequities. We dont put more money towards malaria because its not coming around the world and not coming into wealthy countries in the same way it hits poor countries so yes. Its actually neglected in terms of finding not as neglected as chagas and River Blindness and all these other things that are considered dangerous. This might answer another question. Marine as saying is that possible that the bite would not result in Chagas Disease in the answer is yes. Thats true other diseases as well. Malaria is the parasitic disease. All these terms are so familiar to us and critical mask in the community. Something that is change since last Year Amy is we have become so nuanced in the language of Medicine And Science in ways we were not the forte. C nancy wants to know where these bugs from and. Kissing bugs are largely found in South America and central areas. They are picky about their temperatures. They are like goldilocks. They dont like it too hot or too cold and has to be just right. They like temperate climates and they are here in the u. S. As well. Texas has quite a number of species and a standout for that reason and there are medications. One has been approved by the fda for use in United States and the World Health Organization considered to be an essential medicine. Researchers done at Stand Wife or children in the acute phase of the Disease Treatment with that medication can be really effective and can be really effective with newborns that are born with this disease. Its lowering the Parasite Load in your body. Its very essential for women who are having children but it can lower the chances of you passing that parasite along to your child. But yes that drug is fda approved which is a good thing and quite as drago with advocates and patients. One thing thats helpful for people or member to is sometimes these diseases become more prevalent in the population because of human behavior. In latin america people lived closer and closer to the wilderness areas and deforestation happening. There was once a time where the bugs could hang out by themselves and people would go somewhere else. We are seeing changes in the ecosystem bring us into closer contact. Here in the u. S. The same thing is happening and that was what was surprising to me about texas. Like whats going on in texas. Texas does not have the highest number of people with this disease. California far and away has most people in the country with this disease because of the immigrant population but people in texas are seeing more and more insects. There is k9 Chagas Disease and more and more of texas is getting developed. That was a feature of whats happening in texas that stands out to me and someone i interviewed said my wife opened purse and found one in her bag on her iphone of all places per at from this perspective its like we are showing up in turning branches into corporate Headquarters And Housing for people that are coming to work for these companies. Its interesting for me to think about it from that perspective to. Right. Its such an incredible book and it could not be more timely. I hope you guys will check out the book and i want to say is we are wrapping up, we have a few minutes so we can get another question or two and i want to say i always urge people i used on the Bookstore Bookstore and i can tell you firsthand the only way to stay open is when people show up and buy the veaux. The building was full and there were tons of people there. Its impossible to imagine a moment that literally a huge bookstore like this everyday people walk in and buy books and thats the only way it works. Now more than ever please get something at powells and support us. Absolutely and they have signed copies which is wonderful. So yeah there are plenty of reasons to shop from powells libraries. Any questions or comments before we wrap up or anything you want to say to folks . Thank you for coming. I hope you pick up a copy from powells and thank you so much for being here tonight with us. Thank you, amy. I met fan of your work so this is a treat. This is great. All right thank you so much it was wonderful to host you both this evening and thank you everyone for tuning in tonight. Please consider purchasing a copy of amys new book. You can can get it on powells. Com and be sure to check out our other events and i look forward to seeing you at another one soon. So Daisy And Amy thank you for joining us tonight and for the great talk. Have a good night everyone. Thank you. From washington d. C. Along the railroad lines from philadelphia to New York and decided to head to pittsburgh. We picked the railroad lines because its this nomans land. Its really no Police And Arent that many people. Is this world which you can exist in. We got our water out of creeks and got woods its interesting because they go through the middle of everything. You see the backs of the factories and you go through the ghettos the cornfields and the woods but when we hit Temple Thing you got very rural and very wild pennsylvania was along the riverbed. Ive later found out it was the gateway into the eastwest trending river of pennsylvania. It was a gateway to western Pennsylvania And Ohio in the 1700s with settlers went through a Mountain Gap West of harrisburg. So we did this trip over the course of the year. We would walk 50 or 100 miles and ive write in the book over 400 miles and we were were the only people who knew where we were. There are many areas of freedom but surely thats one of them and one that i particularly enjoyed. Jeremy desilva is an anthropologist at North Or College and editor of a most interesting problem what darwins descendents of man got right and wrong about have Evolution And Part of the Research Team that discovered two ancient members of the human family tree. He studied wild chimpanzees in western uganda and urban fossils throughout eastern and South Africa from 1998 to 2003 and worked as an